Quick questions on the autism community's descriptive terms

[Atrapa Almas]

I've noticed there is some difference between saying someone is autistic vs. saying they have autism.

In spanish, the english "to be" verb is translated as "ser" (related to the self) and as "estar" (temporary and subjet to change state).

For spanish it is confusing that you make no distintions between the both. Lets put some examples:

Peter is angry. -> Its something temporal, so Peter "estar" angry.

Peter is tall -> Its something permanent, so Peter "ser" alto.

So whats the difference between:
Peter "ser" fat
and
Peter "estar" fat

In the first one we consider it to be permanent and related with the self, in the second one we consider it something temporal subjet to change. In english it is confusing. We cant easily know if they say the person is fat in temoral or a permanent way. The verb "to be" is not clear enougth.

The same happens with Autism.

People who consider Autism to be an illness and who looks for a cure will consider Autism to be temporal. So thats why they use "have" instead of using "to be". Like they "have" an illness. Thats why ABA guys are forced to use "have":

At work, we are required to say they "have Autism" and never "are autistic."

On the other hand, people who consider Autism to be a permanent part of the self will use the verb "to be" in the same way spanish use the verb "ser". And by using language that way they kind of defend Autism being a neurodivergence and not an illness.

The spectrum is so variated that people with heavy problems related to Autism may actually consider it some kind of illness, even if it is a generic stuff. Like other genetic "Syndromes".

While more "functional" people are more to consider themselves as a healthy divergence to the norm and thus dislike the "Syndrome" term and the illness related use of the language.

Its difficult to use the same language to reffer to such a different group of people.

 

[Neonatal RRT]

My personal take.

I do not get hung up on labels,...period.

I have described myself as "autistic", an "Aspie", "I have autism", "I am an autistic", "I have Asperger's condition", my psychologist has me officially as an "ASD-1", but will use the terminology "Asperger's condition" when we are talking together.

It doesn't matter, at all to me.

 

[GypsyMoth]

There's also the issue of the "D=disorder" in ASD. There are people who are, or would be classified as, ASD1 who don't require medical care., but would benefit from a little understanding, and perhaps access to training.
I'll never describe myself as "ASDx", or any other "Healthcare-centric" name until they learn to help us.

@Hypnalis, your post raises as many questions as it answers. In your opinion, what sort of help do you see people with ASD1 typically wanting to seek out? Do you think there is a lot of demand for help?

Why does it seem like what help that is out there is geared toward diagnosis or psychiatric/medicated control of behaviors, and not toward coping skills or stress and anxiety management? (This seems like an injustice to me.)

BTW, I've already caught on that there is not a lot of help out there if someone wants to seek help. According to online searches I've done, there is zero help available in my area. I learned this week that my greatest resource may be my co-workers. One of my co-workers has been quite vocal about her autism so I've been watching her and decided to risk asking her if she had any recommendations. She immediately told me there are at least 2 other Autists in our dept. and a number of families with spouses or children on the spectrum. (I am currently providing admin support to a dept. that specializes in working with children, especially those with disabilities. So, given the environment, I'm not finding this discovery to be unusual.)

If there is someone out there reading this who is in a similar boat as me and has run into a dead-end on the internet, it may do some good to ask around.

If at some point (and it won't be soon) control of the terminology is moved away from the medical profession, or in the unlikely event they adjust their collective mindset from "problem solving" to "community health", a suitable term might be found, and I'll consider using it.

This is so prevalent in what I'm reading, that the 'official' definitions are poorly defined, that what they define is either nebulous or inconsistent, or that the use of those definitions varies from one group to another. Personally, I find this very frustrating.

So, why does the medical profession approach this as a problem to be solved rather than a matter of community health? It seems that what needs to change is the medical profession's metaphysical approach, which would allow autism to be approached as a matter of integration rather than as a matter of disorder. Because surely the philosophy underlying such an investigation also determines its method of application.

 

[GypsyMoth]

When I was diagnosed it was called Asperger's.
It seems an easy way for people to know you are an offshoot from what they have
grown up thinking autism means. They instantly think of what is now called ASD-2
or ASD-3 when they hear the word autistic or autism.
The image of needing care and mostly non-verbal.

I'm not so sure most people even know what Autism or ASD means. I'm new to all of this -- yet because I have family who work in special ed (& who talk about it regularly) and family with other medical/mental health issues, I'd like to have thought that my awareness of disabilities was, generally speaking, at a greater level than most people's. But if it weren't for Googling it several years back, when I first learned that a friend had Asperger's and wondered what that was, I would have known very, very little about it. I certainly wouldn't have known that Autism and ASD were even related to the same thing.

 

[GypsyMoth]

In spanish, the english "to be" verb is translated as "ser" (related to the self) and as "estar" (temporary and subjet to change state).

@Atrapa Almas, thank you for your lucid elaboration. Yes-- that made sense.

People who consider Autism to be an illness and who looks for a cure will consider Autism to be temporal. So thats why they use "have" instead of using "to be". Like they "have" an illness. Thats why ABA guys are forced to use "have":

Yet, their choice of language sidesteps the reality of what Autism is--which I find very frustrating (& confusing) as I read about it online. If you don't recognize what it is, how can you purport to have any say about how to respond to what it is?

The impression I am coming away with is that practices that consider a cure or promote ABA must intentionally disregard certain facts in order for their underlying theories to have any informative value. Therefore, disregarding facts is the only way for those theories to maintain cogency.

On the other hand, people who consider Autism to be a permanent part of the self will use the verb "to be" in the same way spanish use the verb "ser". And by using language that way they kind of defend Autism being a neurodivergence and not an illness.

Ah. With a finer distinction and greater ability to concretely identify what the terms refer to comes both a clearer definition and a greater ability to provide support to those who need it most.

(I am just rephrasing what you've written.)

Its difficult to use the same language to reffer to such a different group of people.

Likewise, it is difficult to have different groups of people using the same language applied from drastically different perspectives and intentions in reference to the same group of people.


(Okay, that last bit is just a piece of cheap word-play. I've got all the complaints of the start of a cold and so part of me is concerned that anything I write won't make sense, but at least [for now] that seems to be making sense.)